Advances in whole genome and whole exome sequencing (WGS/WES) technologies have led to increased availability in clinical settings. Currently, there are few guidelines relating to the process and content of informed consent for WGS/WES, nor to which results should be returned to families. To address this gap, we conducted focus groups to assess the views of professionals, parents, and adolescents for the future implementation of WES. The discussions assessed understanding of the risks and benefits of WES, preferences for the informed consent discussion, process for return of results, and the decision-making role of the pediatric patient. Professional focus group participants included bioethicists, physicians, laboratory directors, and genetic counselors. Parent focus groups included individuals with children who could be offered sequencing due to a potential genetic cause of the child’s condition. On-line discussion groups were conducted with adolescents aged 13–17 who had a possible genetic disorder. We identified discrepancies between professionals and patient groups regarding the process and content of informed consent, preference for return of results, and the role of the child in decision-making. Professional groups were concerned with the uncertainty regarding professional obligations, changing interpretation in genomic medicine, and practical concerns of returning results over time. Parent and adolescent groups focused on patient choice and personal utility of sequencing results. Each group expressed different views on the role of the child in decision-making and return of results. These discrepancies represent potential barriers to informed consent and a challenge for genetic counselors regarding the involvement of pediatric patients in decision-making and return of results discussions. 相似文献
The aim of this study was to examine the relationship of youth’s involvement in diabetes-related decisions to adherence. Children and adolescents (8–19 years) and their parents (N = 89) completed the Decision Making Involvement Scale and the Self Care Inventory, a self-report measure of adherence. After controlling for youth age, the degree to which youth expressed an opinion and information to parents was associated with better parent- and youth-reported adherence. The degree to which parents expressed an opinion and information to youth was associated with worse parent-reported adherence. Joint decision-making behaviors (e.g., negotiation; provision of options) also were associated with better youth-reported adherence. Encouraging youth to express opinions and share illness-related information with parents during illness management discussions may improve adherence. Additional research is needed to identify mechanisms of effect and determine associations between decision making involvement and health behaviors and outcomes over time. 相似文献
Though emotional processing deficits are often conceptualized as a core feature of psychopathy, the common assessment of these deficits using the percentage correct (or hit rate) on affect recognition tasks may not provide a full or accurate picture of facial affect recognition in psychopathic individuals. Signal detection theory (SDT) provides a more informative statistical approach by providing independent measures of perceptual sensitivity (d’) and willingness to report perceiving a signal or response criterion (c). The current study employed signal detection methods to test the predictions of the integrated emotion systems and hostile attribution bias perspectives, two theoretical perspectives that make specific predictions regarding facial affect recognition. These perspectives were tested in a sample of 280 adult male incarcerated offenders who were assessed for psychopathy using the Psychopathy Checklist-Revised and who completed a novel test of facial affect recognition presenting 324 digital morphs of faces reflecting systematic combinations of pixels from neutral and affective face images (displaying six different types of emotion) as expressed by four different actors. The findings were generally not consistent with either of these perspectives. Psychopathy was negatively associated with d` for anger. Results also indicated an effect of psychopathy on response criterion for fear and effects of psychopathy on response criterion for anger and surprise that were evident only for some actors. The implications of these findings are considered through the lenses of several theoretical perspectives, and theoretical and methodological limitations of the current study are considered.
Relationship power, which refers to the ability to influence one’s romantic partner, is an important organizing principle in the assessment and treatment of couples. Power imbalance is predictive of various dimensions of marital quality, which explains why it is often a central focus of couple therapy. Despite the importance of relationship power in couple therapy, assessing power in clinical settings has been hindered by the lack of a validated measure of power that has high clinical utility. Data from 640 married couples associated with the Flourishing Families Project were used to develop the Perceived Power Imbalance Scale by conducting exploratory factor analysis, confirmatory factor analysis, dyadic predictive validity analysis, and measurement equivalence analysis. Although power has been conceptualized as consisting of both outcome power and process power, results indicated that the final scale consisted of four items that only tapped aspects of process power. The scale demonstrated good reliability and was a significant predictor of marital quality, marital instability, and depression.
Journal of Happiness Studies - In “Well-Being and Pluralism” (2021), Polly Mitchell and Anna Alexandrova defend conceptual pluralism about well-being. Conceptual pluralism about... 相似文献
This paper focuses on a non-volitional account that has received a good deal of attention recently, Angela Smith's rational relations view. I argue that without historical conditions on blameworthiness for the non-voluntary non-volitionist accounts like Smith’s are (i) vulnerable to manipulation cases and (ii) fail to make sufficient room for the distinction between badness and blameworthiness. Towards the end of the paper I propose conditions aimed to supplement these deficiencies. The conditions that I propose are tailored to suit non-volitional accounts of blameworthiness. Unlike some volitional historical conditions on blameworthiness, the conditions that I propose do not require that the person have exercised voluntary control (e.g., via choices or decisions) over the acquisition of her attitudes or values. 相似文献
Retrospective recall about children’s symptoms is used to establish early developmental patterns in clinical practice and is also utilised in child psychopathology research. Some studies have indicated that the accuracy of retrospective recall is influenced by life events. Our hypothesis was that an intervention: speech and language therapy, would adversely affect the accuracy of parent recall of early concerns about their child’s speech and language development. Mothers (n?=?5,390) reported on their child’s speech development (child male to female ratio = 50:50) when their children were aged 18 or 30 months, and also reported on these early concerns retrospectively, 10 years later, when their children were 13 years old. Overall reliability of retrospective recall was good, 86 % of respondents accurately recalling their earlier concerns. As hypothesised, however, the speech and language intervention was strongly associated with inaccurate retrospective recall about concerns in the early years (Relative Risk Ratio = 19.03; 95 % CI:14.78–24.48). Attendance at speech therapy was associated with increased recall of concerns that were not reported at the time. The study suggests caution is required when interpreting retrospective reports of abnormal child development as recall may be influenced by intervening events. 相似文献
Previous research has demonstrated the association between family functioning and depression. This study evaluated family functioning and perceived social support in men and women in Shanghai who had received a diagnosis of a major depressive disorder (N = 100), including sixty-six women and thirty-four men. The relationship between family functioning and social support of outpatients with major depressive disorders was explored using the Chinese Family Assessment Device and the Multidimensional Scale of Perceived Social Support. The scores from all dimensions of family functioning for both men and women indicated that depressed men and women all reported experiencing unhealthy family functioning. The clinical implications of these findings for the developing practice of family therapy in China are discussed. 相似文献
Impaired facial affect recognition is characteristic of schizophrenia and has been related to impaired social function, but the relevant neural mechanisms have not been fully identified. The present study sought to identify the role of oscillatory alpha activity in that deficit during the process of facial emotion recognition. Neuromagnetic brain activity was monitored while 44 schizophrenia patients and 44 healthy controls viewed 5-s videos showing human faces gradually changing from neutral to fearful or happy expressions or from the neutral face of one poser to the neutral face of another. Recognition performance was determined separately by self-report. Relative to prestimulus baseline, controls exhibited a 10- to 15-Hz power increase prior to full recognition and a 10- to 15-Hz power decrease during the postrecognition phase. These results support recent proposals about the function of alpha-band oscillations in normal stimulus evaluation. The patients failed to show this sequence of alpha power increase and decrease and also showed low 10- to 15-Hz power and high 10- to 15-Hz connectivity during the prestimulus baseline. In light of the proposal that a combination of alpha power increase and functional disconnection facilitates information intake and processing, the finding of an abnormal association of low baseline alpha power and high connectivity in schizophrenia suggests a state of impaired readiness that fosters abnormal dynamics during facial affect recognition. 相似文献